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I was recently diagnosed with EDS. I ran my 23 and me variance report on livwello and it came up with eing homozygous on PLOD1. That seems to be correlated to the kyphoscoliosis type of eds which is really rare. From what I understand it can only be diagnosed definitively by a urine test. My doc couldn’t order it from his lab but said if I could find a lab he would order it for me. he scgeduled me to see A geneticist but I cant get in yhere until october. Does anyine know the name of the test or labs that do the test? I am in tennessee near chattanooga. Thank you so much!
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